Starting treatment early - yes or no?

[benjiboy]

Hi everyone,

Some advice/opinions please. Thumbnail sketch - 29yo man, tested positive September 2011 coinfected with syphilis (now cleared). First bloods: CD4 490, Viral load 1m. Most recent bloods: CD4 930, Viral load 600,000. Everything else normal.

I count myself lucky to have been diagnosed at an early point in the infection, and to be as healthy as I am. I do find I am quite anxious about having a relatively high viral load, both for my own sake (in terms of the constant inflammation of my immune system) and my sexual partners (I don't have a regular partner, but tend to have quite a lot of "casual" encounters!)

Given this, is there any merit to asking to go on treatment now? The draft British HIV Association guidelines for 2012 recommend letting people who are worried about infecting others start HAART immediately, so I would be able to make the argument to my clinic. What are your opinions? Is it better overall to start treatment at an early stage, or is waiting really the best option? I don't forsee a problem with adherence - I already have to to take non HIV related medication on a nightly basis and have done for a few years.

Thanks! 

[phildinftlaudy]

While the ultimate decision to start treatment with meds is one that is between you and your doctor -

For me, if I had the CD4s you have, but the high viral load, I would probably seriously consider starting treatment - particularly if I had access to the meds and knew that I was going to be adherent.

My rationale would be, the high viral load is probably taking a toll on your immune system - with it trying to fight off the infection.

Your CD4s are excellent - but, I guess my concern would be if they start to drop and are coupled with a high viral load that would probably make it more difficult to get them back up there.

But, you may want to see how others weigh in and have an additional conversation with your doc and maybe even see how things play out with one or two more sets of labs - as the viral load may drop significantly as your body does its thing at battling the virus.

For me, I started treatment with a low viral load and a CD4 count just short of 500 - but I was starting to experience increased fatigue, enlarged spleen, and GI issues which doc attributed to the virus' impact on my body. So, it made sense for me (and to me with the guidance of my doc) to start meds.

Best to you whichever route you choose.

-Phil

[newt]

Personally, now, knowing what I do, I would start asap.

But this is not what guidelines say, These say start when your CD4 count is between 350 and 500.

The benefit of treatment above a CD4 count of 500 is undecided, hence the international START study looking at this question.

But for me the decision would not to do with the increased risk of serious  illness and death that comes with a lower CD4 count (under 350-500), it would be a reflection on the accumulated evidence of the effect of untreated HIV on your heart, kidneys etc regardless of CD4 count, plus a huge reduction in the risk of transmission once your viral load is suppressed.

This would not have been my position when I did start though (at around CD4 count of 200 cos that is was guidelines said then). I didn't want to take tablets so I waited until I hit the guideline threshold. If I started knowing what I know now I would have been straight on meds, but the knowledge was not available and my emotional attitude to meds was different.

However, I wish I started earlier, I felt dead tired before i started meds. This went pronto when i did start them. How was I to know this would be a benefit? No-one ever mentioned it.

- matt

[eric48]

Hi,

Welcome to the forum.

You have the luxury of time and you are young enough so that your immune system will recover quick, should you prefer to wait until treatment is really needed.

It is not yet 'scientifically' known whether, in your case, there is a real undisputed benefit in starting now. On the long run though, the sooner your start, the less of the virus is being archived in the system.

That viral load of yours is a bit high and you may want to see if time gives it a chance to go down, below 100 000.

If it remains high (> 100 000 or even 1 000 000), you should take that under consideration and stamp the bug before it does more damage

In some countries insurance coverage will start only if your CD4 goes below a certain value. You may want to verify that you qualify for coverage.

People of your age have NO Idea how devastating the bug is ...

I think it should be reminded over and over: it is nasty fellow.

There is no hurry in your case... but if that VL remains high, starting treatment is certainly not a bad idea.

Cheers

Eric

[benjiboy]

Hi Phil, Matt & Eric,

Thanks for your very helpful replies. By the sounds of it, I am right to at least want to pursue this with my doctor.

Your point about insurance kicking it at certain CD4 cells is a good one, Eric, but fortunately I live in the UK so treatment is free on the NHS - although obviously there are pressures on budgets in the current climate so they don't routinely put people on treatment until about the 500 mark, I gather.

Matt/Phil - very interesting to hear your views on the toll HIV takes on your body. I don't have any symptoms I can put down to HIV per se, but I have noticed I've been pretty knackered a lot over the last year or two. It's come on gradually and I just put it down to getting a bit older, but maybe the HIV could be a factor.

I'm going to get my bloods done on Weds and I'll make an appointment to see the consultant a couple of weeks after that. Any further tips for making my case would be very welcome - I find my consultant can be a bit dismissive so I'll need to have a cogent argument prepared!

[newt]

Hello again

UK guidelines recommend (and the new ones due in March will continue to recommend) treatment at a CD4 count of around 350. And certainly not at a CD4 count over 500 in most cases. Consequently a CD4 count of between 350 and 500 indicates a possible start time.

But I have yet to meet a UK doc who wouldn't prescribe treatment outside guidelines for someone 1) who really wanted to be on meds 2) with a good reason for why meds are needed, eg fatigue, viral load over 100,000, wanting to reduce the risk of passing on HIV << this last point is in the new guidelines due in March 2012.

If you have a doc who won't start you early if that is your preference, there will be a clinic/doc somewhere close who will.

But do bear in mind, if your HIV is new your body might actually cope with it very well for many years. It will take a few months for your body to find its balance with the virus. A good test of this is if your CD4 count stays (on average) over 500 (ie "normal") and viral load goes down (say under 50,000) and stays there. Starting meds is pretty much a one-way street (start, then ideally don't stop, it's bad for your health).

 -matt

[alberche]

Hi there benjiboy,

My case was similar to yours. I was diagnosed only 6 weeks after being infected (I had a terrible seroconversion episode) and started meds one month after, I mean, 2 months and 1/2 after being infected. That was in 2006.

I had the same doubts you are having now, but a sincere conversation with my doctor helped me to decide for starting at that very moment.

Six years after I've been undetectable all the time, I have managed to keep my CD4 well above 1.000, and no major complaints in general as per regards of meds.

As noticeable issues, I would mention osteopenia (loss of bone mass), not clear whether it is due to meds or to the infection itself, some fatigue episodes from time to time (I have a very stressing job), and some dryness in my skin that comes and goes.

I do not know what might it be come out of not starting meds so soon. Maybe now or very soon I would be anyway to start.

If we are supposed to be taking meds all of a timelife, I see no major difference, in terms of risks or quality of life, between starting asap, if you have the chance, or waiting four, five or six years. And I see more pros than cons.

Taking meds from the beginning help you to be conscious you are living with HIV, and to take much more care of yourself. The sooner you adapt meds to your daily life, the better. Once you start, fears and doubts tend to go away and clarify, you will feel better since "you are doing something" and do not depend on the wait and see the next results routine. Also, being undetectable from the beginning prevents you could transmit your virus to other persons by reducing greatly the risk of transmission. And, due to the same factor, an undetectable viral load, your brain, heart, and your body will be less stressed and your health in a long term basis will probably be better.

Sure, there are not 100% conclusive evidences yet, but all the results and the clinics point in that direction.

Here in the forums you will see all kind of experiences and opinions as per regards of this. I counsel you to read all them and then make your own opinion.

I hope everything goes well and the easiest for you!

a big hug!

:-)

[spacebarsux]

Hey Benjiboy,

You've got some great advice so not much to add really, except that I've been poz roughly 6 years and not yet on meds (labs in signature line).

What's keeping me from getting on meds is mainly the feeling that once I get on them there's no going back and that guidelines don't recommend them yet.

If you feel you're ready for treatment then go ahead and start or if not, you could wait a bit. Your call really.

Best.

PS- I like your avatar name btw. 

[benjiboy]

Just thought I'd give you an update on where things have got to following my original post.

I had my bloods done a couple of weeks ago and saw my consultant today. My results were pretty much the same as last time. We had a good chat and he was very receptive to my starting meds. Interestingly, he said that the size of my viral load didn't make any difference to how hard my immune system is working (which surprised me) but that it did mean that mutations were more likely.

Because I have bipolar disorder, Atripla and other efavirenz-based combinations are out (although again, interestingly, he said efavirenz doesn't have directly psychoactive side effects, but can cause problems due to lack of sleep).

Nevirapine is also out because I have slightly raised ALT levels in my liver. So we've gone down the protease inhibitor (PI) route - Darunavir boosted with Ritonavir plus Truvada (Tenofovir/FTC). It does mean four tablets a day, but the really important thing for me is that I can take them all at the same time. I know from experience with my bipolar meds that I am a bit crap at taking things twice a day!

Those of you who live in London, as I do, may have heard that prescribing has changed due to new purchasing arrangements between the London HIV Consortium Drugs & Treatments sub-group and the drug companies. It's worth noting that my treatment does not reflect these arrangements because they are not clinically appropriate, given the liver issue and my bipolar meds. Hopefully this may offer some reassurance to anyone in London who may be starting treatment soon and is worried about the clinical implications of the new cost-saving measures. My consultant did have to speak to the pharmacist to check he was allowed to prescribe this combination, but I am confident that I'm getting the right drugs for me, not the right drugs for the number-crunchers!

I'm not going to start my meds immediately, as I want to give work some notice in case I have any side-effects that interfere with my job. I will start at some point next week once I've been in to see the pharmacist, so I'll let you all know how I get on!

Benji x

[mecch]

You said you tested in positive in Autumn.. But how do you know that this discovery was "early" in your infection???  Did I miss your explanation.  You have either a good guess or the facts about how long you have been HIV+??   


It's probably best we are all clear on what is meant by "early treatment".   Treatment before a recommended CD4 threshold???  Earlier than...

Or Treatment early in an HIV infection.  Two different ballgames. (IMO)  Maybe though with the same result

[benjiboy]

Mecch,

I described my infection as early based on my CD4 count and viral load at diagnosis and my HIV testing history. This wasn't just my assessment, but also that of my HIV consultant - but you're right, there's a degree of guesswork in there.

I define early treatment as starting treatment before reaching the 500/350 CD4 cells/ml threshold (depending on whose guidelines you're following!), not so much in chronological terms.

[buginme2]

Starting treatment early - yes or no?

At this point starting treatment early has been proven to be beneficial in reducing the chances you will spread HIV to someone else (per the HPTN 052 study - although technically this was in hetersexual folk). 

Will starting treatment early benefit your own health?  That question has not been definitively answered yet and is currently under study in the START clinica trials.

Personally, I would start early (ie upon diagnosis, whatever that means).

[benjiboy]

An update since my previous post:

I saw my HIV consultant today for my first set of results after starting meds. My bloods were done 17 days after the first dose, and the results are impressive. My viral load (VL) is down from 320,843 to 8,100.  Somehow the lab ballsed-up all my other bloodwork so I had to go back and do them again, so things like my CD4 count aren't back yet. But the VL was the one I was really interested in.

Even my consultant was surprised at the steep decline in my VL. I am pleased as punch. We did more bloodwork today and I'm going back on 9 May for updated results. Hopefully at this rate it won't be too long before I'm undetectable.

So, am I pleased I decided to start meds? You bet! Everyone has different approaches to living with their HIV. My way is to actively engage with it as much as possible. I did a load of reading and even managed to correctly predict what meds I would be best starting on. I have copies of all my labs. And popping a few pills every evening with dinner doesn't bother me at all. It's the same as eating for me - I need to do it to stay alive and healthy, and I need to plan for it. The initial side effects were pretty unspectacular - somewhat irregular toilet habits - and those have pretty much disappeared now.

Most importantly, I feel like I'm controlling my HIV now, and not the other way around.

More soon,

Benji 

[2manyquestions]

I was also diagnosed early on and also had pretty high VL but reasonably safe cd4 levels.  I really didn't want to start to start meds for similar reasons and held off a bit.  I finally decided that I was tired of feeling tired  and wanted to start meds.  My doctor felt this was mostly due to the high VL.

  Here in the US, I didn't realize that even with insurance, meds can be quite expensive and my insurance didn't cover me as well as I'd thought.  It took months to get this resolved affordably.  Now, I've just started meds and after just a week, I already feel better and I also think its safer for any potential partners if I get my VL down.

As others have said, it's probably best to get acclimated and to find what meds work for you and your lifestyle before you *need* them.  It's just got to be safer to have control of this very powerful disease and to stop it from invading your cells and tissue throughout your body.  This is where it hides.

  I have felt it well enough in the worst of times to know how real and serious it is.  I've be never felt so sick in my life as during seroconversion, this lasted 6 weeks (very, very sick) and I still have not felt the same as before my infection (6 months ago) - Im still tired, weak, naucious, insomnia, muscle aches, etc

At the very least, I suggest to someone newly diagosed that they figure out what meds you'll take, when you'll take them (consider who's around during mealtime, etc for privacy reasons and if you can easily keep the regular schedule) and how you'll get them (insurance, assistance, etc) This proved more difficult than I'd expected.

If everything is lined up and decided, you'll be ready.

[benjiboy]

It's interesting to read about your experience, 2many. For me, HIV has been a largely "theoretical" experience. I don't recall any form of seroconversion illness and have never had anything I could put down to HIV - just the usual winter colds and so forth.

I have to say I frequently read posts from US forum members with my head in my hands. I cannot imagine having the additional stress of insurance, co-payments and the like on top of all of this. I read a post by one member recently who ended up without drugs for several days due to some problem to do with his insurance/pharmacy and it is just beyond comprehension to me. The UK National Health Service is far from perfect (and I work in it, so I know!) but, when it comes to my HIV care, they have been spectacular.

[2manyquestions]

I have heard many people say that you just need to manage the illness and take care of yourself.  I think that this is as right as anyone can be since everyone seems to be affected differently (different people, different strains, differences in their health, habits, etc)

What caught me off guard was all the red tape... So at least if you're in the US (perhaps other countries)  Just figure it out in advance so you're prepared, if and when you'd need it.

  I thought I could wait a while, I'm just early thirtees and I was healthy...  I had a bad seroconversion illness but even after that I figured I would bounce back easier, must be the strain I have.  Another week on the meds and I feel even better so I know it's the right decision for me.  If I hadn't felt so drained and beat down (no matter how much rest I got) I would have put it off longer. 

Not trying to get political but this is one area that we still have trouble with in the US... I love this country but Health care needs to get sorted.  Whether its cancer, HIV, etc... Basic care needs to be there.